We CARE about awareness. At CARE Counseling, our clinicians can assist with managing symptoms such as depression related to medical health concerns. We welcome care coordination/ referrals from primary health and specialty care providers. We are trained in managing mental health distress and have a clinician on staff with special interest in Type 1 Diabetes
Despite all the advances in medical science and technology, there is still no cure for diabetes. A person with diabetes has to live with it and manage it all their life. The challenge, of course, is being diligent and consistent with diabetes management. Type 1 diabetes is challenging to manage because it is so comprehensive. Research shows that the adherence rate for chronic conditions is about 50%. Despite extensive studies and research, that number has not changed significantly over the past 3 decades.
What is adherence? How does it apply to people with type 1 diabetes? How can a person with type 1 diabetes improve their adherence? And how can mental health professionals help? These questions were answered by Dr. Katherine Fan, a psychiatrist and pediatrician, at the 2016 Asian Outreach Day. Dr. Fan spoke with attendees about the factors that affect a person’s short and long-term dedication and commitment to managing their diabetes. Here’s a recap of her talk:
Adherence is the active, responsible, and flexible process of self care and self management with a goal of overall health and wellness. An adherent patient strives to achieve good health by working in close collaboration with health care staff, instead of simply following rigidly prescribed rules.
In the context of type 1 diabetes, adherence can also be known as “collaborative diabetes management”, “patient empowerment”, or “self care behavior management”. It can be useful to break down diabetes adherence into a number of areas:
This may help the patient, medical care providers, and support system prioritize and focus on which parts to work on.
Also, it is important to distinguish between Adherence and Compliance. Compliance implies a paternalistic relationship between and patient and his/her doctor. The patient takes a passive role in diabetes management, simply following doctor’s orders and doing what they say. On the other hand, adherence is more of a partnership between a patient and his/her doctor, as well as his/her support network. In fact, the patient is an active participant in planning and management.
What makes a person with diabetes more or less likely to adhere to their diabetes management plan? There are 4 main types of factors that diabetes adherence:
Complexity of treatment: The more complex the regimen, the lower the adherence rate. For example, if a patient has to take 10 different kinds of medication, 4 times per day, it is difficult to integrate this routine into daily life.
Duration of disease: The more chronic the illness, the lower the adherence rate. This may seem counterintuitive, but patients who have been diagnosed longer actually tend to have lower adherence rates than those recently diagnosed. Managing a condition over long periods of time may lead to a more casual attitude, or it may lead to burnout.
Delivery of care: Diabetes care can be delivered a number of ways: via a multidisciplinary team, a single general-care provider, or community treatment, to name a few. Research has shown that patients with diabetes seen specifically for their diabetes received more counselling on diet and adherence than patients with diabetes seen for an acute illness.
Age: The teenage years tend to be hardest time to stick to a diabetes management plan. In contrast, parents of young children with diabetes are more likely to be adherent.
Self-esteem: Research has shown that high levels of self-esteem are related to high levels of adherence to physical activity regimens, adjustment of insulin doses and dental self-care
Self efficacy: Self-efficacy is defined as an individual’s belief in their ability to succeed specific or accomplish a task. A healthy sense of self-efficacy can play a major role in approaching goals, tasks, and challenges. The more a patient is able to advocate for him and herself, the better the outcome.
Stress: Stress and emotional state is also correlated with treatment adherence. The less stresses a person experiences, the more likely he or she will adhere to diabetes management.
Comorbid conditions: A comorbid condition is one that occurs at the same time as another illness or condition. Comorbid conditions such as depression, alcohol abuse, eating disorders, and others can adversely affect diabetes adherence. This effect is not limited to mental conditions: physical comorbidities also tend to lower the adherence rate of diabetes.
Patient-provider relationship: The better the relationship between a patient and his or her provider, the higher the patient’s adherence rate will be. Patients and providers who communicate with each other tend to have improved relationships.
Social support: The benefits to have a social network for a person with type 1 diabetes are well known. Greater social support means better levels of adherence. For children and teens with type 1 diabetes, great parental involvement also means better levels of adherence.
Stressors:The more stress a person has in their life, the harder it is to prioritize and manage diabetes
Conflicts: People with diabetes are as multifaceted as everyone else. Frequently, they are called upon to choose between giving attention to diabetes self-management or to some other life priority. They can face time pressures and social pressures during school events, work events, family events, holidays, and more.
Lifestyle factors: A person’s lifestyle can directly affect their diabetes adherence levels. Are they sedentary or active at work? Do they work long hours? Do they travel a lot? How much time do they spend in front of the television? Do they have a hobby? Different circumstances require individuals to adjust and maintain their diabetes management.
Socio-economic status: The economically disadvantaged and ethnic minorities may find it particularly challenging to visit healthcare providers or to live a healthy lifestyle. They may have limited access to fresh fruits and vegetables, small living spaces. Their schools may not provide opportunities for physical activity. What’s more, financial constraints may prevent them from going to a gym. Those factors, combined with their local climate, may make regular exercise challenging.
There are four kinds of players on any diabetes management team: the Patient, the Parents (or family/friends), the Physician, and the Environment. All players have a role to play in diabetes adherence. When each “player” contributes in a positive way, it leads to better adherence and better outcomes. Here are tips on how each team player can work to enhance adherence and wellness:
It takes a team to manage diabetes, but adherence starts with the patient. As the person with diabetes, you’re going to be living with your body for a long time, so take care of it! Here are some things the patient can do to make diabetes adherence easier:
Parents (and family) play a huge role in enhancing adherence. Here are some things parents can do to help their child with T1D:
Physicians play an important role. A physician who can help enhance adherence is one who:
Some environmental factors are difficult, if not impossible, to control, so focus on things that you can control. For example, you may not be able to enhance access to health care, but you can provide diabetes awareness and education. You can educate not only yourself and your family, but also the broader community. Parents can help educate their children’s school teachers and friends. Adult patients can start support groups online and in real life. Technology can also improve diabetes awareness and education.
How can mental health clinicians help patients achieve overall wellness?
Mental health clinicians can provide treatments such as cognitive behavioral therapy, motivational interviewing, behavior modification plans, or family therapy. Diabetes affects the mind as well as the body. Mental health is an important step towards the journey to your best self. Never be afraid to ask for help from a mental health professional!
Anxiety has become one of the most commonly diagnosed mental illnesses in the United States. It seems everywhere you turn, someone is talking about it. Whether it’s their child or themselves that are afflicted, everyone and their mother seems to suffer from some level of anxiety. There has been a particular uptick in the level of anxiety reported in children and adolescents. While mental health professionals are trying to put their finger on what exactly is contributing to this – technology, political climate, homework – you don’t have to dig deep to find a reason for increased levels of anxiety in those living with Type 1 diabetes. To begin unpacking this issue, first let’s take a look at what the “A” word actually means.
A certain level of anxiety is healthy – necessary, even. It is what prevents us from engaging in dangerous behaviors, and what keeps us motivated to accomplish the things we need to do. The dictionary definition of anxiety reads as follows: “distress or uneasiness of mind caused by fear of danger or misfortune.”1 When this distress gets too high, or is disproportionate to the situation provoking it, the person tends to suffer from anxiety instead of benefitting from it.
A prolonged state of worry or tendency to worry about any and everything. GAD can have physical manifestations, such as GI problems and difficulty sleeping. Someone living with GAD will have a tendency to view everything through a lens of anxiety, and be bombarded with “what-ifs?”
Panic disorder can occur after a person experiences one or multiple panic attacks, and is living in constant fear of the next one occurring. Everyone experiences panic attacks in different ways, but the most common symptoms are shortness of breath, feelings of impending doom, de-personalization (that feeling when you are floating outside your body), and heart palpitations, to name a few.
Basically what it sounds like, social anxiety disorder is when people experience extreme discomfort and anxiety around other people. This anxiety is rooted in the fear of what others think of you, or of embarrassing yourself or looking foolish.
T1D and anxiety are made to exacerbate one another. The fears and thought patterns that fuel anxiety are inherent to managing diabetes. On the flip side, struggling with anxiety can wreak havoc on your blood sugars. The more time I’ve spent working with and trying to pick apart anxiety disorders, the more I’ve realized how counterintuitive diabetes management is to anxiety levels.
Running through the back of every anxious mind is a pestering whisper of what if? “What if I die?” “What if I embarrass myself?” “What if I fail?” These persistent questions can be crippling. However, when managing diabetes, it is often necessary to ponder what if. For example, I am about to pre-bolus for my dinner on my way home, but what if I get stuck in traffic? I am preparing for a run by adjusting my dosage and snacking, but what if it rains?
At the forefront of diabetes management is planning. Unfortunately, planning often invites what ifs, and what ifs can easily manifest into anxiety. When you are living with anxiety, it is often difficult to differentiate between rational or helpful what ifs and irrational, detrimental ones. Considering the rain or traffic while planning your insulin dosage can be productive, while repetitively pondering the possibility of going low and passing out during your exercise routine is not.
Similarly, planning for diabetes care can interfere with being present in the current moment. In recent years there has been growing evidence of the efficacy of mindfulness-based stress reduction (MBSR) and meditation for treatment of anxiety2. Much of our worry is rooted in what may or may not happen in the future. But it is hard to focus on the present moment and often difficult to be spontaneous when you’ve got insulin on board (IOB), sensors with downward-pointing arrows, and a fixed amount of juice in your handbag. Even the actual practice of meditation can be interrupted by alerting insulin pumps and CGMs. As mentioned above, diabetes management involves a lot of planning. And a lot of planning means a lot of future-oriented thinking.
Much like planning, with diabetes checking is essential. Checking you blood sugar, checking your IOB, checking your low supplies. But for someone with anxiety, checking can spiral into an obsessive ritual. People suffering from obsessive-compulsive disorder (OCD) have certain rituals they perform to quiet obsessive thoughts that repeatedly run through their mind. Because checking is so essential for diabetes management, it’s easy for someone susceptible to anxiety to fall into a pattern of over-checking. Picture this: you feel anxious about going low, check your sensor data and see no downward arrows. You feel a temporary wave of relief. But moments later, those thoughts recur. They get louder and louder in your head, until you have to check your sensor again – still no downward arrows. You see how this can fall into a negative thought-behavior cycle.
Fortunately, much like type one, anxiety is manageable. But it takes work. If you feel like anxiety is interfering with you or your child’s everyday life, consider seeing a therapist. There are many therapists who have experience working with people with chronic illness. And if they don’t, BT1 has a helpful guide to teach them about type 13.
Your primary care doctor or pediatrician may have some referrals. Or, if you feel comfortable, ask around. It’s more than likely that many people in your life see a therapist and you have no idea. Or, if you have private insurance, you can try calling the “Member Services” number on the back of the insurance card and asking for referrals to local in-network behavioral health providers. There are also many ways to locate a therapist online:
If you have Medicaid (or Medical, or your state’s equivalent), your state’s Division of Mental Health and Addiction Services should have resources for local community mental health centers that accept this insurance. Your therapist or primary care doctor will also be able to suggest if you should consult a psychiatrist. A psychiatrist can prescribe medications for behavioral health concerns.
While diabetes and anxiety may make a great pair, you don’t have to constantly live at their mercy. As you learn to accept and manage your anxiety, you’ll learn how to live well with it. It won’t be easy, and there’s a lot of trial and error. Of course, having type one means you’re used to that! And always remember, you’re not alone in this.
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Are you sick and tired of doing everything you’re supposed to do, but feel like your blood sugar is still out of control? Do you feel like you don’t care anymore about managing diabetes and want to just give up? If any of these things sound familiar, you may be experiencing diabetes burnout.
Diabetes burnout is a state in which someone with diabetes grows tired of managing their condition, and then simply ignores it for a period of time, or worse, forever. Unfortunately, diabetes burnout is common, and most people with Type 1 diabetes (T1D) have experienced it at some point in their lives. After all, if you have T1D, you have to be “on” 24/7, and as much as we would like one, there are no breaks. People who experience diabetes burnout aren’t necessarily depressed and are certainly not lazy. In fact, almost everyone with diabetes, even those experiencing burnout, want to live long healthy lives. But sometimes diabetes can feel overwhelming and folks can get burned out from all the hard work.
What does diabetes burnout actually look like? While it may look different in people, there are some common signs and symptoms. These include:
If you have T1D and are feeling burned out, please know that there is hope! Diabetes is hard work, and until we have a cure, it will continue to be hard. However, there are some thing you can try that can help you overcome, and even prevent, feelings of burn out.
People with T1D tend to be really hard on themselves. They expect a lot from themselves, and when they don’t meet their own expectations, it can be frustrating. Anyone who lives with T1D knows that it is almost impossible to do everything “right” all the time. And even if you do everything “right”, your blood sugar can have a mind of its own and do some crazy things. If you expect perfection, and perfection is not possible, it’s normal to want to give up. Instead, try cutting yourself some slack. It’s ok to strive for perfection, but it’s important to cut yourself some slack sometimes and be ok with slipping up. And remember that sometimes, having wacky blood sugars is part of having diabetes.
Diabetes takes a lot of hard work and sometimes everything can seem overwhelming. When things get overwhelming, you may not even know where to start. Instead of tackling a big task all at once, try breaking it down into small steps that you know you can accomplish. For example, telling yourself you want to reduce your A1C from 8% to 7% may sound like a Herculean task. However, if that is your goal, identify the specific things you can do today to get there. For example, you can check your blood sugar at least 4 times a day and count carbohydrates at every meal and take insulin to cover. Taking small steps can make achieving big goals seem a lot more obtainable.
Feeling like you’re alone in your life with diabetes is a big risk factor for diabetes burnout. With diabetes, isolation is one the biggest risk factors for becoming burned out. If you feel that nobody understands what you are experiencing or that you are the only person with diabetes that feels this way, life with diabetes can be a lonely place. While feeling supported does not make T1D go away, it can make it easier to live with. Getting support, encouragement and empathy from others can be a critical part of staying motivated to manage your diabetes. Sometimes the people in your life may not know what kind of support you need. Be clear with these people what would be most helpful and what you want them not to do. Remember that other people with T1D can also be a great source of support. These are the folks who know exactly how you’re feeling, because, at some point, they have probably felt the same way. If you don’t know anybody else with T1D, there are resources that can help. Many communities have meet-ups for people with T1D and there is an active diabetes online community on social media.*
If you feel burned out with T1D, you are not alone. Just remember that many people have overcome their burnout and are able to live long, happy and healthy lives with T1D. If you are experiencing diabetes burn out and you feel like you can’t deal with it on your own, it’s important to get help from a mental health professional who understands diabetes. Talk to your endocrinologist to see if s/he can recommend one in your area.
